NATHHAN National Challenged Homeschoolers Associated Network

Christian Families Homeschooling Special Needs Children

 Home | Login | Contact Us | Resource Room

My Family:  A Patchwork of Prayer

My husband hoisted the last suitcase into the van, arranging pillows and sleeping bags compactly around it. The children were seat-belted in, chattering excitedly about our trip out East. As the car doors shut I called to the back instinctively, "Does anybody have to go to the bathroom?" 

Four-year-old Juliana made her way forward, and we hurried into the house. Upon first glance I was puzzled, then shocked by a saturation of brown, viscous liquid down the bib of her dress. On closer inspection I saw that her stint, inserted for drainage of bile a month before, had repositioned internally due to broken sutures, and caused the leakage.

Reporting back to the car, luggage and tear-filled children were lifted out and Juliana passed in for an emergency visit to a Chicago hospital where liver transplant surgery had been done. It was ten o'clock on a sultry August night. As the van pulled away there was nothing to do but serve ice cream to a disappointed lot, put them to bed, and wait.

There had been much waiting over the years of parenting twelve children, many of them adopted and with serious medical needs. Waiting for test results, lab reports to come in, for fevers to break, medicine to take effect and open restricted airways so a child and I both could breathe. Laying plans aside that Friday night, I prayed for Juliana and pondered how it should be that God had blessed me, who had always wanted six babies, with a DOUBLE PORTION now ages one to thirty years old.

My thoughts wandered back to a delivery room in 1973. Post polio syndrome had taken its toll on my back and our third son, Nicholas, would be the last baby born to Terry and me. Admiring Nick's tiny toes and wisps of soft hair, I asked the physician to keep us in mind should he learn of an infant needing a future home. I cherished this child in my arms and wanted a nice big family.

The tubal-ligation that followed was a catastrophe. A perforation in the intestine filled my abdomen with acid and resulted in massive infection. While I struggled to live in the ICU, my baby went home and was transported daily to a nursing mom. Big brothers Peter and Ty, ages five and three, carried on digging holes, washing shiny stones and hunting fanciful turkeys in the back yard woods. If I could have seen ahead, past separation and pain, I would have known the joy of grown sons today who walk honorably with their God.

Peter, whose name means "Steadfast" is now a commodities trader with a generous bent. He and his wife support missions and youth, both in the states and abroad. Ty, "Industrious One," works diligently as a roofer managing his crew. With his wife and two sons, he opens his home to those who need help and spiritual refreshing (like eat my food, sleep in our beds and join us in family devotions). Nick, whose mother was saved from imminent death at his birth (through wonders that would take another book to tell) has grown into his name, "Victorious Spirit." On staff with a campus discipleship group he ministers to athletes, having run on a college scholarship, and won the high school state mile. His joyfulness brings the light of Christ into a young persons' world.

My thoughts returned to the children asleep upstairs and the one who was not. I wondered how it would go for Juliana. She would need anesthesia and a surgical procedure to repair the stint. Hospital personnel disappear routinely on weekends. Even in-house patients are held over until Mondays for radiologist's services and operating rooms. . .I mused on the others dozing in their beds. What incredible stories they had. Mary, nineteen, had come at a year and a half, through a neighbor whose son had hit Ty in the head with a rock on their first grade playground. Our compassion for this classmate had prompted his mom to approach us on adopting her small grand daughter who desperately needed a home. My little girl wore ribbons and pink lace; her big brothers picked out her dresses and tied her bonnet bows. She favored my baby pictures. It amused me one day at a lake when a woman watching the children play exclaimed, "That little girl is your own, but where those towhead boys came from I would not know!" God made a perfect match, though His plan was to add some color, irregular patterns and texture to the family design.

 Soon after my fortieth birthday I learned of Ana, multiply handicapped from an abusive skull fracture at ten days of age. Now five and a half, he suffered left hemiparesis (effect like a stroke), speech and seizure disorder, hydrocephalous (resolved by a shunt), mental retardation . . .  and she wasn't potty trained. I cried as I told Terry about her. The more I prayed for Ana, the more I fell in love with the little Hispanic beauty whose brown eyes sparkled with mischief and fun. We brought Ana home to share her sister's room, a pink bed of her own and baby doll waiting for hugs. In time Ana would learn to write her name, stamp envelopes in a hospital billing department and proudly fold laundry for our entire household.

  We moved to a larger home. Terry envisioned our family complete. I filled up the rooms with children; the eye of faith saw toddlers playing at our feet, the ear of hope heard laughter, and newborns' soft cries in the night. I waited two years, then found myself seated one day in a social worker's office. My husband and I were laying hands on a pregnant girl's tummy praying in accord for God's blessing on her child. Susan was a believer, repentant of past wrong, dauntlessly seeking parents who would train up her child in the ways of the Lord.

  Weeks later I soothed her through a contraction,  holding a damp cloth to her head.   I rushed beside her cart through delivery room doors. Courage, effort, desperation of the final stage of labor, then a triumphant push and ten and a half pound Travis tumbled out. The doctor placed him in my arms, his blue eyes open, his soft skin not yet darkened to his biracial hue. I sang "Jesus loves me" as he searched my face. "Do you like him?" Susan asked. "Like him?  I LOVE him!" I laughed, gently setting him at her side. We cried and thanked God together for the baby that had so much love. Terry was elated with his new son. Travis bears his daddy's middle name, Noble. He has the quiet spirit of his birth mom. He loves to create with his hands and plays the cello skillfully. He reads his Bible daily and often shares a passage or a psalm.                       

An infant in the house meant practicing taking turns. Just when I'd be completing a task, looking forward to holding the baby, Terry would unknowingly reach over to pick him up. Desire for a companion for Travis stirred deep inside, a babe for each of our arms. When Travis was a year and a half I was well prepared for the phone call.

 A two pound three ounce "preemie" had been born at twenty eight weeks. Placed on a ventilator for breathing and mainline for feeding, this fully black little boy lay in his hospital crib alone.  This child whom I had named Trevor had been knit in my heart before I even knew him. Home coming day at three months was almost dashed as I arrived to delays of liver testing, an IV protruding from his small shaven head. By late afternoon he was released to be adored by his daddy, brothers and sisters and held to his mother's breast. His baby book reads: "One morning I asked God again, 'Please bring us a baby boy.' I talked to a friend later. She said, 'There's a little boy who's just been born and needs a family. Do you know of a family?' 'Us!' I cried, "We want this baby boy!"

We'd already named you Trevor. Then God gave a middle name, James. We discovered they both meant wisdom . . . I found out you already had another beautiful name. But the day we brought you home I was reading in Isaiah, 'I will take away the old name and give you a new name." So you became 'Wisdom," His name.

 Trevor today at seven is active and observant. He is a gifted artist and plays the violin. His unceasing questions and high energy level are a challenge at times to both intellect and patience, but love runs deep and covers him with infinite affection.               

Josiah came home next, and in so doing fulfilled every desire I ever had to be a nurse. He arrived with nebulizer treatments for breathing, nasal and gastric tubes to slip down his nose and throat, oxygen to regulate, medications to give, a genuine stethoscope and cords which he learned to flip around his fingers with finesse. He occupied himself with uncommon toys in the empty hours in his bed - plastic syringes, lengths of adhesive tape rolls, and interesting tubing. Born with tetrology offallot, (four heart defects) and tracheal stenosis (narrowing of the wind pipe) Josiah's condition was deemed "incompatible with life." Saved by God's guidance of a surgeon's hand, Josiah was to require over forty operations, including reconstructions of his heart and trachea.

It was a "touch and go" life. On a moments notice, his trachea would constrict, he'd gasp and struggle for air, terror in his eyes. Then an emergency dash with Dad, my prayers behind, that he'd make it to life support in time. Josiah's nine lives was the talk of the hospital. He would not die.

On one critical occasion I was alerted that he'd not make it through the night. Josiah lay in the ICU, his windpipe so narrowed, the ventilator tube would not fit down his trachea.  Oxygen was not exchanging, carbon dioxide levels were perilously high. He was too unstable for surgical dilatation. His surgeon was on an airplane anyway, due to arrive in two hours.  By then, I was told, Josiah would be gone.  A respiratory therapist asked what she could do. "Please pray with me," I cried. We ducked into a washroom where we could be alone. "Dear Jesus," she pled, for she loved Josiah too, "We touch the hem of your garment for healing, just like the woman in the Bible with the issue of blood. May your power flow into the body of Josiah. You know what the doctors are thinking. You hold the keys to death and life. If it be Thy will restore this precious child."

We returned to bedside to hear the doctor exclaiming, "The CO2 has come down! I don't know how or why but a little window has opened. If it continues to decline Josiah may come through." I saw his motionless chest begin to flutter like a butterfly. Air filled his lungs. The nurse voiced that she had seen a miracle. We thanked the Lord through tears. His courage and good humor made him the darling of the ward. Josiah gestured a greeting to everyone who walked through the ICU door from the cleaning woman who passed him her mop, to the head intensivist. Josiah, the invincible, was a mighty spirit in a baby frame.                   

Then one day at two and a half, while Josiah was peacefully sleeping in his daddy's arms the Lord passed by and took our son away.  His body so quickly was emptied and so were our hearts.  We cradled his mere form in a mixture of grief and awe.  Gathering his socks and little things about us we marveled that we had been privileged to parent this handiwork of God.                

Hospital social workers get wind of people who love kids; there are always a few on hand in neonatal units without familial visits or even a given name.  Nurses each have their own favorite nomenclature.  A baby's identity can change with each shift.  Thus it was with Whitney, Vinessa, Yolanda when I met her one floor beneath Josiah's intensive care unit where she was lying as sweet and yellow as a butter cup.  Biliary atresia had caused her jaundice and would necessitate, in just a few months, a liver transplant.  God had given me Grace for the name of our next little girl.  Terry thought she looked like a perfect Juliana.  So Juliana Grace came home, wrapped in our love and in the intensity of commitment to stand by her through her uncertain journey. We would not do it alone.  The God of all grace would sustain us, along with the other children He had planned to bring along.                

Jori arrived when Juliana was a strong, post-transplant two year old, just one month after Josiah's death.  It was a same-day delivery.  I learned of her in the morning and she was with us by dusk, amidst the hub-bub of remodeling, with carpenters hammering, drywallers dragging their scaffolds and tools through a dusty, disorganized house.  Not the settled environment I like to bring a child home to, but she was destined for a shelter that night.  So we parted the ladders and  made a path to welcome our new daughter.  Jori, at sixteen months, reported to be mildly retarded and developmentally delayed, was far from the case.  As I eased her out of her snow suit and sat her beside me on the floor,  she began a low, guttural growl.  Then she mechanically raised her arm, fixing her gaze on her hand.  "Autism" sprang to mind.  The social worker gave her a sideways glance, quickly signed some papers and was gone.  The children gathered around and gasped at the blankly staring new sister.  Thwarted attempts to engage her in eye contact or a smile resulted in tucking her in bed for the night.  She never looked back or watched me walk to the door.  She was locked in her little world.  Who was behind this pretty ebony face with barrettes and braided pig tails all over her head? Jori's mom had suffered psychosis at her delivery and was not aware that she had given birth.  A history of mental illness, cocaine was also suspected.  There had been no prenatal care.  With that sketch of information I rolled up my sleeves the next morning to begin.  Jori would need to learn to eat from a spoon.  With a speech therapist's assistance we endured days of screaming and resistance.  The drywallers kept on working. For months she shifted, detached, between silence and rage.  We tried sign language and a picture word computer to help her communicate.  Language was gibberish; it had no meaning to Jori.

Then one winter day a year after she'd come home, I heard a little hum from the other room.  I strained to listen.  In perfect pitch Jori was humming "Glo-o-o-ria, In Excelsis Deo."  Music was to open up her world. There is plenty of it in a Suzuki family - classical pieces, rich hymns, strings, piano, flute.  She has been immersed in melody.  Today at five Jori sings a repertoire of songs. She is learning her colors, carries on conversation (referring to herself in third person), delights in dress up and  playing dolls. She asks for her needs to be met like,  "Mommy, help with Jori's shoe," running into my legs with a squeal.

 Emily Rose came home to claim her name on August 23, l995.  "Rose" had been in my  dreams and before my eyes;  then  God showed me "Emily" on a baby marker next to Josiah's gravestone.  I learned of our new little daughter when she was two days old, an abandoned baby withdrawing from heroin. 

 She was so tiny, we couldn't see the top of her head over the dashboard of the social worker's car.  I scooped her into my arms and slipped her out of a rather huge dress,  putting her specially chosen one on.  Travis placed a yarn doll he had made in her wee hand.  Her crib was adorned with love notes and decorations the children had created, a button dangling from a string, snips of colored thread.                

Every child has their own homecoming song.  Emily's tells a little tale about Trevor.  "Emily Rose,  Emily Rose, do you know Trevor counted eleven toes? Then he counted his own and it was the same; how we love your name.  We're so glad you came, Sweet Emily Rose."           

Soon after her arrival it was discovered through a blood test  that Emily was positive for  HIV.  We waited again on God  through the ensuing months to know if she was infected , or  whether the test reflected  her  birth mom's AIDS.  Thankfully she converted, a healthy little girl.     

Emily's  hyperactivity  is offset by the reminder that her life is a gracious gift.   Through her impish impulsivity Terry remarks with a twinkle, "God had to make her cute!"            I

 was fifty two and missing Josiah and his special care.  Surely another child must need the same   specialized  skills and procedures that Terry and I had learned.  I was looking for him. I  had a  wonderful name... My heart leapt at the offer.  A baby boy had been born in Springfield, Illinois. All my contact knew was that he had a cyst on the brain and something called Dandy Walker Syndrome.

I drove through a rainstorm, Travis at my side weaving a little basket to place in Christian's hand.  His appointed  family  did not proceed with adoption when  they'd learned of his disabilities.    His young birth mom kissed her  precious  bundle good by and trustingly  sent us  on our way  home.   We all admired his beauty.  Coordination problems from underdeveloped areas of the brain and an obstructed airway  caused frequent congestion and choking.  We snapped on our latex gloves and became acquainted with the local paramedics again.           

At one year Christian has thrived.  He kicks his legs up for tickles and folds his hands to sign "more".  Though diagnosed with cerebral palsy, sitting is emerging and he rolls from side to side. We're learning a lot from his therapists, delighting in Christian's smiles and in every stride.

 Returning in thought the August night of our disrupted departure, I anxiously answered  a phone call from Juliana's hospital.   She'd be taken, unprecedented, into surgery at 2:30 A.M., returning by noon the next day.                  

The stint replaced, we reloaded the car on Saturday, voiced a prayer of deep thanks,  and arrived in Pennsylvania not too far off schedule. Ascending the peak of Jack Mountain, we overlooked the fields of the Kishacoquillas Valley.  Lush shades of green and yellow formed a patchwork much like the lovely quilts of  the Amish  friends whose company we were in.

I thought of our family, a patchwork of names and faces, lovingly stitched together by grace and prayer.  Some squares had not made it into the design.  They were sewn into other quilts, like our foster baby Christopher, who had another adoptive mom of his own.  I thought of the strength that God had given me and how He chooses the weak things to confound the world.  I slid my arm through Terry's.   We  drove on contentedly  to our host family's home.